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DeRanger


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RE: Hi Folks
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JoAnneh,

Tumor markers were high for me, but Dr's could not find the cause.  Early ultrasound found nothing.  Never wanted a biopsy, never wanted to do the early treatments as the results were low and my brother, who has the same 1a, completed the double therapy regimen twice and relapsed each time.

Later when I went to see about the more promising triple therapy, the ultrasound showed something, and I was referred to surgeon who was/is wonderfully skilled.  Subsequent MRI and CT scans showed 2 tumors, total 8.5 cm.  So far (coming up 18 mos) I am a survivor, nothing guaranteed.  I feel blessed that things have worked out this way.  Finding the cancer was amazingly fortunate and I am thankful.  It is worth the CT scans and MRI's and getting shot up with strange substances.  Just like the tx we have all experienced.

Everyone is different and you should follow your own instincts.  Try and approach things with a minimum of fear and confidence that it will be OK in the end.  A positive attitude and loving support helps more than can be imagined.  You have these - celebrate them and go with them, let them carry you.

Bill



__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
JoAnneh


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Thank you Malcolm and Tig!
I will call and schedule An U/S.
I love my Hep C forum friends.
M, your grandson is precious!!
Love the picture of you two together!


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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
mallani


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Hi JoAnne,

There is NO radiation from MRI.  I'm getting an MRI next week, as I am difficult to ultrasound.  Ultrasound is cheap and quick, and is reliable for most patients. It is highly dependent on the skill of the Sonographer. I mentioned my 10mm haemangioma on another post.  It was missed on Ultrasound by myself and very good sonographers.  CT and MRI allow the Radiologist to look at the vascular pattern, which is very important for small liver lesions. I am happy to have an ultrasound every 6 months, then alternate with CT and MRI.  As a retired Radiologist, I have strong opinions about the limitations of imaging for some patients. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hi, my wife has been a Ultrasound Technologist for 25 years and has a very good understanding of it. I've been fortunate to have been able to get scanned anytime I wanted. Diagnosing cirrhosis isn't so easily determined by U/S but she can find tumors/masses quite easily and with extremely high rates of success. I relied on U/S for decades after finding out I had HCV and the results were always substantiated by other tests as I moved forward. I'm going to agree with your doctor's position on this. Don't over stress Joanne, you're doing great!!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JoAnneh


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I have been putting off my liver ultrasound,
I just don't want to fight HCC.
I have a friend battling liver cancer and
Begging for a transplant!
She felt fine, started gaining weight
Went to doctor to test thyroid and her
her tumor markers were up. Ultrasound AND
BIOSPY DID NOT SHOW HCC
It was discovered by MRI.
I asked my doctor for MRI
and she said as long as tumor markers
Are normal she prefers ultrasound due to
Less radiation. Any feedback??
I admire your attitude and strength Bill!
You are very inspiring.....
Good to know someone lived to beat HCC
and still has a full life. cant wait for you to achieve SVR



-- Edited by JoAnneh on Wednesday 20th of November 2013 01:42:28 PM

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Loopy Lisa


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You are a very upbeat and brave person considering you have had cancer and HCV. I wish you all the best!

 



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
suziq


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Welcome Bill.

I am impressed with your sense of humor and optimism.  You have certainly had your share and more with your hepatitis.  Your participation here will be an inspiration for all of us..   

My daughter lived in the Tahoe area for 25 years.  Owned a house on Palomino Dr in Gardnerville for about 10 years.  Beautiful area.  Do miss the visits there since she has moved.  Coyotes at night are a wonderful sound.

SuziQ 



__________________

Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
Matt Chris


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Hello Bill

Welcome to the forum as well, your story is very inspiring and we are happy to have you as a member and cancer survivor. Its quite amazing that our Liver can be so resilient, we will be pulling for you with your EOT coming soon.

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
DeRanger


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Malcolm,

Thanks for the greetings - everyone here has been welcoming and so inclusive.

I figure the SVR will take care of itself; the results are not in my control  directly at this point.  I know what you mean about working.  I am blessed with a great job that I love and one which has kept me busy , engaged and fun.  That has been a saving grace since the surgery as well as helping me get through the treatment. 

I know the anemia can kick ass - I think the resulting fatigue has been the hardest thing to deal with.  I am an avid hiker, backpacker and skier and this has been limited severely with this treatment.  So I have had to adjust for this and it has been difficult.  I did retire for 3 years, but now have worked for the last 3 and so glad I have. 

I am fairly active at work but can sit down when I have to.  Had to go home early a couple of days and missed several due to the need to take a break.  Have had to take rest days after the HCC surgery and during the therapy  as well.  I just want to get back to where I was before the surgery and treatment.  I know I will make it, and look forward to the challenge and opportunity.

Glad you have SVR and sending you thoughts on your continued progress with this and keeping that HCC away. 

Bill

 



__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
mallani


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Hi Bill,

Welcome to the Forum, and thanks for sharing your story.  I did the 48 week Victrelis trip and got the SVR reward in August. Being Undet. at 8 weeks usually leads to SVR, so I think you've got this beat.  I had all the side effects you mention, but the anaemia floored me.  Being retired, I just became a couch potato, which contributed to my profound muscle wasting.  I'm just about back to pre-Rx normal.

Congrats on beating HCC.  I've done several posts about post-Rx screening, and I'm having an MRI next week (I'm very difficult to ultrasound).  I've still got cirrhosis, and although the risk of HCC has decreased, this is still my main concern.  Let us know your progress. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
DeRanger


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Rebeca,

You're welcome and I know you will be able to meet the challenges.   It is an opportunity to connect with things that have true meaning in this life and become a stronger.  Not easy, but you can do it.  You might find support in places like this or in places and from people you least expect it from.

Part of the adventure of life.  (Didn't lose all my hair, just thinned out what was there.)

Bill



__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
rebeca


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Wow !  Thank you for your sincerity and congratulations.

You are a fighter, and you have a very strong will.

I´m waiting for a treatment, and when I think about it, I´m afraid, perhaps because I don´t have too much support , and I fear  the side effects  (and although it seems silly, I hate hairless image, je, je). Oh! please! Don´t  judge me for this nonsense !!!!)

Read your testimony has given me a lot of strength.

Thank you very much

 



__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
DeRanger


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Thanks John,

I asked my Dr. the same question, and he said it does not grow back disease (cirrhosis) free.  I want to believe otherwise.

Congratulations Bob on your successful treatment and good luck on your upcoming tests.

Bill



__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
newmex


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Bill,

They also found a couple of lesions on my liver as I was being evaluated for the treatment. Am so lucky and thank God they were not cancerous. Its amazing the liver can regrow like that. So, just out of curiosity, if the liver does regrow, are the new sections non-cirrhotic, or all healthy new liver?

Tig, also sorry to hear about your sister, and best of luck on your treatment.

Bob, good luck on your test, will also keep my fingers crossed for ya



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John
Biggyb


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DeRanger wrote:

Everyone seems to be affected a little differently.  Most of my symptoms have been mild (so says my Dr.) and I have been able to ride through or come to terms with some of the more intense episodes or prolonged symptoms.  They've included fatigue, rash and dry skin, depression, blurry vision, irritability, brain fog, anemia, insomnia, terrible taste (metallic) in mouth, aversion to some foods, dry mouth, nausea, general feeling of malaise, and hair loss (among others).


 Welcome Bill to our forum, there's a few of us who are on, or done with the triple with Victrelis.

I too did the big 48, with about the same side effects as you. I too was Und at 8 weeks and still am.., go for my 6 month post VL check in a few weeks (fingers crossed)..Hang in there, sounds like the Vict is working well for you..~Bob



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Tig


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Hello Bill and welcome to the forum. Thank you for sharing your bio with us, you've got quite a history! Congratulations on all the good news but none more impressive than beating the HCC. I lost my Sister to it 7 years ago. From diagnosis to passing it took less than 6 months. So it's vitally important that everyone stay on top of their care and treatment, you just never know. Your doctor sounds like a caring individual, with some serious skill. Your paths were meant to cross Brother, that I know for sure. I'm very happy for you and appreciate your gracious offer of support and would like to return the same. You've found a very caring and intelligent group here on the forum. I encourage you to read up on the stories and lives of the members here, the Gurus are an impressive bunch. Please keep in touch, I'm anxious to hear more about your journey through hell and how you slayed one of the most formidable of beasts, CA. Best of luck and congrats on almost completing the treatment, I'm about a week behind you. What a day to look forward to!!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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newmex


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Hey Bill,

Congrats on completing the therapy, its good to see people who have done it as I am just getting started.

One week in so far of the triple therapy with Victrelis. You give me some hope as it doesn't seem like the side effects have been that bad on you. Its amazing the differences in severity of the side effects but guess I wont know how it will affect me til I get there. Am going to try to work as long as I can, will keep me occupied, and off the couch, will see how it all works out. Good luck on the rest of treatment. what a coincidence you will be done on Thanksgiving



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John
DeRanger


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Just a posting from my "biography", introducing myself.

HCV over 35 years, liver cancer survivor, triple therapy patient (Interferon, ribavirin, victrelis) one week to go to end of treatment, 48 weeks - genotype 1a.

Viral load from 5 million+ to non-detectable by week 8, been that way since.  Usual side effects, but have managed to survive them and keep fairly active and a positive attitude, but my ass gets kicked every once in a while.  Glad to be almost done with the therapy, have not treated the HCV before, since the prognosis was not good for remission. 

Liver cancer discovered when I decided to have the treatment and the CAT scan and MRI discovered tumors.  Stage 1 cirrhosis. Had liver resection 7/12, subsequent checks have shown no recurrence.  Started regimen to treat 12/28/12, be done Thanksgiving in two weeks.  Grateful for the opportunity to have found the cancer and have a great surgeon.  I have been blessed to have the chance be treated for the HCV and also supremely thankful to have the great support of my wife Lisa, family, friends and co-workers.

Will be glad to answer questions or give support to anyone.  I feel for everyone having to go through this.  Not easy, but few things in life that are important are.

Hey, as I write this the big ol' full moon is setting out my window and the coyotes are howling.  Can't beat it.  Later.



__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
DeRanger


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Tig56,

Thanks for your words of support and encouragement.  I will do some research here and get to know the stories of some of the other members.

I am sorry to hear about your Sister, I know it happens fast and early detection is of vital importance. 

In my case, there were no symptoms I was aware of.  Deciding to do the triple therapy was the fortunate circumstance, since the tests found the tumors.  My HCV Dr. referred me to the surgeon and he is indeed a man of amazing skills.  My tumors were too large to allow any consideration for a transplant and I was lucky it had not spread further.  Lost half my liver, but it has grown back.  Am about to go for my 18 month post-surgery check in a few weeks.

Congratulations on almost completing your treatment.  WHEW!

Bill



-- Edited by DeRanger on Sunday 17th of November 2013 04:35:05 PM

__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
DeRanger


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Everyone seems to be affected a little differently.  Most of my symptoms have been mild (so says my Dr.) and I have been able to ride through or come to terms with some of the more intense episodes or prolonged symptoms.  They've included fatigue, rash and dry skin, depression, blurry vision, irritability, brain fog, anemia, insomnia, terrible taste (metallic) in mouth, aversion to some foods, dry mouth, nausea, general feeling of malaise, and hair loss (among others).

Keeping busy has helped a lot - I enjoy my work and it energizes me.  I take the long-term view that it will be fine in the end and this has a limited run - there is an end to it.  I thank my liver and my body for being willing to do such hard work and try to rest and sleep when I can and need to.  Drinking lots of water has helped.

You will  be able to get through this.  It is a challenge and an opportunity.  Knowing that times will be tough, also know that you do have the strength to get through it and meet the challenges.  The other thing I have learned is that sometimes you just have to go with it and not fight the side-effects.  They will cycle through and you will be a stronger person for coming out the other side.  Good luck to you.

Yes, it will truly be a great Thanksgiving.  Thankful for what I have gone through and what is in the future.



-- Edited by DeRanger on Sunday 17th of November 2013 04:32:36 PM

__________________

1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
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